Pray for Katie

Katie is 13 years old and was diagnosed with Hodgkin's Disease, a lymphatic cancer. This site is a request to pray for her. Call her prayer pager 1-361-333-KATY (5289), enter your ZipCode and # key, to let her know you have prayed for her. Updates of her progress will be posted on the site. The Power of Prayer is Awesome.

Tuesday, July 12, 2005

Chemo to Permantly Sterilize Katie

The doctors have shown their unkindness by using drugs that would sterilize my daughter. The doctors have shown an uncaring attitude toward the Wernecke’s by Dr. Wells’ refusing to honor the phone call request of Edward to stop the planned chemo and change to another safer drug option shown below. Nor did they offer a clinical trail such as below. The doctors were obligated under patient rights to explain all alternative treatment options to us or to CPS. The doctors said "this is our recommendation and you must do it all". The doctors and CPS never explained to Katie that these chemo treatments would make her sterile. They are in charge of her medical care and were to explain everything to her. They did not even provide an opportunity to store eggs. This is a question of bioethics and professional code of conduct.

We asked the doctors two important questions last Friday: One, what was the cure rate for the proposed treatments for Katie’s cancer? Two, what other evidence do you have to show that this cancer has returned and is active cancer? Realize that everyone has cancer cells in their body and that your immune system destroys these cells. Two questions that any concerned parent would expect an answer to. We wanted to know that the cell picture we were shown actually represented actively growing cancer in Katie, since they actually removed that tissue and it was no longer in her body. And finally, when we go through these treatments with Katie, what is her chance of being cured with these treatments?

The treatment regimen included 4 cycles of chemo with ifosfamide and venorelbine. Then High Dose Chemo, to totally wipe out the bone marrow and white blood cells which takes you to the point of death and requires one to be in hospital isolation ward for over a month. Some people die from this procedure alone. Then a Stem Cell Transplant and then Radiation therapy of the full neck and chest.

Hodgkin’s is probably least understood but has the greatest cure rate of any cancer. Surely the doctors at M. D. Anderson, the greatest cancer center in the world, are proud of their cure rate especially with a so easily cured cancer such as Hodgkin’s. During the meeting, the doctors, at M. D. Anderson, refused to quote a cure rate. Why?

Also, we asked the doctors to show us evidence that this cancer has returned and is active. They did not answer us. I then asked why if this cancer is back was it stated in the report to the court that there was no change in the CAT scan done by M.D. Anderson on June 20th and the one done in Corpus Christi on April 22, 2005. You see they make detailed measurements on the size and mass and growth of the tumor in the CAT scans. If this is active cancer then it must be growing and increasing in size. Yet, they find no changes in 60 days (90 days since the last chemo treatment). Where is the at risk factor of dying that justified taking her away from her parents and keeping her in CPS custody and care? There isn’t one. And we want her returned immediately.

There is also a huge conflict of interest here. I did not know M. D. Anderson Cancer Center was part of the University of Texas, therefore a state organization. CPS is a state organization. I want to know we received a fair and unbiased determination of Katie’s condition. We have not been able to obtain or view the medical records of Katie. We should have been allowed to go to a more neutral cancer center or have the results and finding double checked by doctors of our choosing and pathologists of our choosing. Again, Katie's and our basic rights were violated. We should be allowed to go to a physician of our choice. Throughout this ordeal from June 1 to July 12, 2005, Katie was never at risk of dying and this was not an emergency situation, as evidenced by lack of commencing any medical treatments during this time period. In fact she has been exceptionally healthy, gaining weight, and free of problems for over 90 days until the state and doctors intervened and did unnecessary surgery on Katie.

A normal treatment of Katie’s Hodgkin’s disease after the negative PET scan in April would probably have included 2 more cycles of chemotherapy OR radiation treatments only OR a clinical trial such as below. After all, radiation is all that Dr. Alter, at Driscoll Children’s Hospital, was recommending as to what was needed in an emergency order issued by the court.

Katie no longer has her thymus gland. The thymus gland is responsible for the production of T cell lymphocytes; the bodies main defense against cancer. Hormones secreted by the thymus gland are necessary to activate other immune functions of the body. Now all of this has been lost and Katie’s chances of a full recovery are now greatly diminished. Put plainly, any little infection would kill her. The surgery opened the tumor and left an open wound that could activate and spread cancer cells thoughout the body. A paper on thymus cancer did not recommend cutting into the tumor because of the likelyhood of allowing cancer to grow out the incision.

Katie is placed in a home with 7 to 11 kids with special medical needs. She is in a room with 2 other kids. I don’t know what these kids have or their problems specifically, but I am greatly concerned. It is also quite likely that some of these kids have Aids, or other infectious diseases, placing Katie’s life in great danger. The more people she has close contact with the greater the risk of infection. In our home she has her own bedroom and bath with special air filtration and our air conditioning system has ultraviolet lights to kill any germs.

We want honest answers. Edward sent the doctors a list of 26 questions and to date those questions have not be answered. We want to see those answers in writing. We want what is best for our daughter Katie. We are not against these treatments if proven to us they are necessary and want treatments that would cause the least harm to Katie. Remember that doctors take an oath to cause no harm. We want to choose with the doctors the best treatment for our daughter Katie. We want to choose our doctor. These are rights all parents are entitled to and should not be denied by CPS or the State. And no doctor should ever be allowed to force treatments on someone against their will or against the will of the parents of a child when this is not an emergency or a life or death situation.

http://www.nci.nih.gov/cancertopics/pdq/treatment/childhodgkins/
HealthProfessional/page6 shows a number of treatment options:

A number of chemotherapy drugs not generally used in the initial treatment of Hodgkin’s lymphoma have documented activity against recurrent Hodgkin’s lymphoma including:
• Moderate or high-dose cytarabine.
• carboplatin/cisplatin
• ifosfamide
• etoposide
• vinorelbine
• gemcitabine
• vinblastine [17]
Combination regimens used in the treatment of progressive/recurrent Hodgkin’s lymphoma include:
• ICE (ifosfamide, carboplatin, etoposide) [7]
• DECAL (dexamethasone, etoposide, cisplatin, cytarabine, L-asparaginase) [6]
• ifosfamide and vinorelbine [8]
• vinorelbine/gemcitabine [18]

Alternative Clinal Trials from the M. D. Anderson web site:
Hodgkin's Disease
Previously Treated
• ID01-201: Pilot Study of Rituximab Plus Gemcitabine for Patients with Relapsed Nodular Sclerosing or Mixed Cellularity Hodgkin's Disease
That is exactly how Katie’s Hodgkin was classified.